Two US moms helped a family of a child with a rare disease escape Ukraine so that their son could receive treatment. Nadia Bilous and her family found themselves retreating to a basement for safety to protect themselves when Russia invaded Ukraine in February 2022.
More families came to shelter with them, and after a while, Nadia’s 10-year-old son Andryusha, began to decline in health. He has a rare disease called GRIN2B-related neurodevelopmental disorder. It causes developmental delays, intellectual disability, seizures, and other symptoms.
Andryusha had been taking a medication through a clinical trial before the war and was receiving therapies that helped him to get better. But due to the war, he was cut off from those treatments.
Nadia was very concerned about the health of her son. It was evident that he needed immediate care and that he wouldn't be able to thrive in their current condition for long.
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“I can’t even explain to you how horrible and horrifying everything was,” the mother said. “It was really stressful for him, and his condition was really bad.” But her life changed when two mothers from the US reached out via email.
Liz Marfia-Ash messaged Nadia's family to ask if they needed help. They asked if she could help them flee to another country so Andryusha could receive the medical care he needed. Liz agreed.
“There was no turning back,’” she told Today.com. “It gave me a focus to be like, ‘OK well I can’t obviously help everyone, but I can at least do something for this family.’”
Liz had started the GRIN2B Foundation after her daughter was diagnosed with the disease in 2014. “There was no support system in place,” she recalled of when her daughter was first diagnosed. “There was no website with information. They couldn’t give me a pamphlet, like ‘Here’s what GRIN2B means.’ It was like, ‘Well, it’s very rare.’”
Within her foundation, Liz funds research and supports families who have a child with GRIN2B conditions. Through the foundation's contact database is how she discovered the Bilous family. She began working with Hillary Savoie, someone whose daughter was thought to have a GRIN2B-related disorder, but later found out she didn't.
During a temporary ceasefire is when the mothers took the opportunity to get Nadia and her family out of Ukraine. “That was the only chance that they had to get out. They had to leave precisely when they did. Otherwise, they [would've been] stuck," Hillary said. “I cannot say enough about Global Guardian. They arranged for this family to be ushered [across the border]. There was a wheelchair waiting for him. … It was 26 minutes for them to be processed through the border, and then they were met on the other side and brought to Krakow [in Poland] by another team.”
